Dorian... quite the happy boy!
Anna with the boys. I'm sure she thinks we're crazy!
Only Wynn can make a hearing aid look good!
Wynn is officially wearing his hearing aid everyday. The right one doesn't fit well into his ear so it's being remolded and should be ready within another week, but he wears the left one when he is awake. We have a hard time with the ringing sounds the hearing aids make, but the audiologist assures us we need to just wiggle it in deeper into his ear and the ringing should stop. A whole new world has opened up to him now that he can really hear. The profile picture of Wynn above shows his left ear... cute, huh?
Dorian and Wynn had their 6 month check-up this week with another round of vaccines. They didn't like it at all, and Anna couldn't watch them get their shots. Both babies rank under the 5th percentile in height and weight but that is to be expected with their condition. Both little guys weigh 11 pounds. Next month we'll be busy with lots of doctors appointments, we'll be seeing some new specialists that were recommended. Not because anything is going "wrong" at this point, but because we need to get the babies introduced to the folks we'll be depending on in the future (cardiologist, ophthalmologist, and pulmonologist).
We've heard through the grapevine that the Children's Hospital in Denver is going to have an MPS Awareness Day with some events planned around it. We're trying to find out more information about it and possibly may pack the kiddos and go out there. We have good friends, the Simpsons, that live out there so we'd have fun visiting them and also enjoying everything Colorado has to offer. But there's no definite plans, we just want to start getting involved with different ML II research and awareness foundations out there. You never know when a new study is going to pop up and it would be nice to have the babies be known in the ML II research community.
One of our friends asked us in lieu of gifts, what foundation we'd like donations made to. Although we haven't really picked one, and we don't plan to start our own foundation, we want to affiliate ourselves with one this summer. The one I've been reading up about a bit this month is called the Hide and Seek Foundation (that supports all lysosomal diseases). Their website is www.hideandseek.org. More information to come in the next few months... stay tuned.
Wishing everyone a safe and enjoyable month!
Mercedes, I'm so glad everything is working out wonderfully with Anna! I can't wait to meet her.
ReplyDeleteI'm sure you're excited to have Anna just to have another female in the house! And Wynn DOES make that hearing aid look good!
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